Including people with cognitive disabilities in user testing of technology: References

GENERAL HOW TO

• Henry, S.L. and Grossnickle, M. (2004) Accessibility in the User-Centered Design Process. Georgia Tech Research Corporation, Inc; Atlanta, Georgia, USA. http://www.uiaccess.com/accessucd/contents.html
• Lewis, C.H. and Rieman, J. (1994) Task Centered User Interface Design: A Practical Introduction. http://hcibib.org/tcuid/

EXAMPLES AND EXPERIENCES

• Davies, D.K., Stock, S.E., and Wehmeyer, M.L. (2002) Enhancing Independent Task Performance for Individuals with Mental Retardation Through Use of a Handheld Self-Directed Visual and Audio Prompting System. Education and Training in Mental Retardation and Developmental Disabilities, 37(2), 209-218.
• Davies DK, S.E. Stock, M.L. and Wehmeyer.  (2004a).  “A Palmtop Computer-Based Intelligent Aid for Individuals with Intellectual Disabilities to Increase Independent Decision Making”.  Research & Practice for Persons with Severe Disabilities,  28(4):182-193.
• Dennett, B. (2001) Developing client-focused work with people with profound learning disabilities. In R. Winter and C. Munn-Giddings (Eds.) A Handbook for Action Research in Health and Social Care. London: Routledge, 116-130.

REFLECTIONS ON DESIGN GUIDELINES FOR PEOPLE WITH COGNITIVE DISABILITIES

• Bohman, P. (2004) Cognitive Disabilities Part 1: We Still Know Too Little, and We Do Even Less. WebAIM, http://www.webaim.org/techniques/articles/cognitive_too_little/

ETHICAL ISSUES

• Banja, J. ( n.d.) Ethical Considerations in Research Design Involving Persons With Traumatic Brain Injury. NIH Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury. http://www.nichd.nih.gov/publications/pubs/traumatic/Abstracts.htm
• Committee on Clinical Research Involving Children, Board on Health Sciences Policy (2004) Ethical Conduct of Clinical Research Involving Children. Washington, D.C.: National Academies Press.
• Dresser, R. (1998) Research Involving Persons With Mental Disabilities: A Review of Policy Issues and Proposals. In National Bioethics Advisory Commission,  Research Involving Persons with Mental Disorders That May Affect Decisionmaking Capacity, http://onlineethics.org/reseth/nbac/mindex.html
• Eyde, L.D. (2000) Other responsibilities to participants. In B. Sales and S. Folkman (Eds.) Ethics in Research with Human Participants. Washington, D.C. : American Psychological Association, 61-73.
• Fischmann, M.W. (2000) Informed consent. In B. Sales and S. Folkman (Eds.) Ethics in Research with Human Participants. Washington, D.C. : American Psychological Association, 35-48.
• Howell, J.D. and Hayward, R.A. (2003) Writing Willowbrook, Reading Willowbrook. In J. Goodman, A. McElligott, and L. Marks (Eds.) Useful Bodies; Humans in the Service of Medical Science in the Twentieth Century. Baltimore: Johns Hopkins University Press, 190-213.
• National Bioethics Advisory Commission (1998)  Research Involving Persons with Mental Disorders That May Affect Decisionmaking Capacity, http://onlineethics.org/reseth/nbac/mindex.html
• NCDRR Staff (2002) NIDRR  Grantee Experiences with Human Research Participant Protection and IRBs. National Center for the Dissemination of Disability Research (NCDDR) Research Exchange, Vol 7, No 1.
• National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979) The Belmont Report. http://ohsr.od.nih.gov/guidelines/belmont.html. Reprinted as Appendix C in B. Sales and S. Folkman (Eds.) Ethics in Research with Human Participants. Washington, D.C. : American Psychological Association.
• Wong, T.M. (1998) Ethical issues in the evaluation and treatment of traumatic brain injury. In R. Anderson, Jr., T. Needels, and H. Hall (Eds.) Avoiding ethical misconduct in psychology specialty areas. Springfield, IL: Charles C. Thomas.

SELF ADVOCACY PERSPECTIVE

• Self Advocates Becoming Empowered (n.d.) http://www.sabeusa.org

PARTICIPATORY DESIGN

• Wattenberg, T. (2004) Beyond standards: reaching usability goals through user participation. ACM SIGACCESS Accessibility and Computing archive Issue 79  (June) 10-20.